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Tuesday, June 18, 2013

Guilt

I have this guilt thing going on. You will understand why when I reveal the reason. If you have been reading my blog or even if you read my profile info you know that my husband is suffering from Alzheimer's and has been since his late 50's....he is almost 74 now. Currently we are coming up on 2 years August 1st that I placed him in a Memory Care Facility about 45 miles from home, very close to my daughter, but not so close to me. There were several reason why I chose that particular place, 1) it was almost brand new 2) I was totally impressed by the Director and her total dedication to her clientele 3) everyone has a single room, no bunking with each other which can cause even greater issues down the line 4) small, only 40 rooms total and all on one floor and 5) it is cheaper than any place close to me. Unfortunately I live in a high rent district, good for home values, but not so good for nursing homes/independent living facilities/memory care facilities.

So with that said, you now know the total reasons why I chose where I did. When my sweetie first moved in I was visiting about twice a week. He still knew me, his face lit up everytime I walked in. We spent time walking or sitting holding hands. This continued for probably the entire 1st year. As the 2nd year approached, his memory continued to falter and there were days that I felt he did not recognize me. When my daughter or granddaughters would go to visit, he had no clue as to who they were. My visits became further apart. Now, he no longer recognizes me ever, there is no conversation, he doesn't want to sit, he walks around in circles, sometimes he looks at me with anger. It is without question, unpleasant.

Now this is where the guilt comes in....I let my visits stretch further and further apart. I know that the chances of him knowing who I am are slim to none, and everytime I go I can't help but think of how it should be, not how it is. Each time I plan a visit, I let something change my mind....it doesn't have to be much. I have talked to the director about this and she says she completely understands...but what she doesn't understand is this feeling of guilt.....through sickness and in health guilt.

Lately he has begun to fall, fortunately he has not injured himself, altho a trip to the hospital last week was scary, but they found nothing. Last night he fell off the bed, kind of slid down on the floor, again no injuries. And I know that visiting will not remedy the falling, but again the guilt.

I don't know if writing this out is going to compel me to feel any less guilty, but this is my way of letting some of it go. My days are filled with thoughts of him, wanting him, yearning to spend our "golden" years together, but seeing him as he is now is so very painful. I hurt and so want this disease to stop before it takes too many other lives.

miss deanna...i can only imagine how difficult this situation must be. i applaud you for sharing your feelings here, because this is the kind of stuff that i personally find so difficult to share. but one thing i've learned is that shedding the light on these negative emotions reduces their power over us. which is what i hope for you. because you have such big heart and so much love to give. saying an extra prayer for you and your sweetie. love,kelly

I'm so sorry Deanna! I know how you are feeling. It is a terrible disease, it is really so hard on the ones who love the people who have it. I felt that way about visiting my MIL, I always went with such a heavy heart but when I could let go of that a little, even through the depths of the disease, I could still see her personality. Even though she didn't know who we were and even though we couldn't understand what she was saying, she was there. It was hard to let go of the way she was and accept and love the way she became because of the disease. I pray for strength for you. I know you love him so much.

Oh I think about your situation all the time. Up until a few weeks ago my neighbor has been in her home with a caretaker. Her Alzheimer's has taken over and is probably at the same point as your husband. Day after day the police were next door. She kept calling them because of the stranger in her house that was trying to rob her (her caretaker). Finally her family was able to put her in a home (there was finally an opening). I think as hard as it is to put her in a home, it is working out better now for them. I feel better now I don't have to see her standing in the street yelling at strangers (her friends) trying to get her back in her house. It is heartbreaking. It is the worse disease and I pray they find a cure. It has taken the lives of my great grandparents and my husbands. Ugg. Don't feel guilty it isn't your fault he has this disease. I wish I knew the answers.

It is not difficult to understand the guilt and pain of watching someone you love fall deeper into an illness and not knowing exactly how to handle it. I wish you peace within yourself wherever you may find it. Your health also counts. Hugs.

do you think that guilt is a woman thing? i feel guilt over things all the time. some folks have even asked me if i was Catholic? no i am not. i think you have to do what feel the best. i know it would be so tough. i worked for a family once that was in a similar situation. the wife was at the beginning stage so she still knew her husband. but would forget certain things quickly.

point is - you have to go for you. make it about you. if you feel lead (or wish) to go - then go. i'll say a prayer. many prayers. may God hold you, in his hands & help you let go of this guilt. big big hugs. ( :

(FYI -- tried to send this comment by email, but it was returned undeliverable.)

Deanna -- your post struck a familiar chord with me today. As you mightremember, my dad passed from Alzheimer's in 2007 after a lengthy battle.

I, too, suffered from a little guilt at not visiting him as much as Ishould have. True, it was an hour and a half's drive for me, but thatreally wasn't the reason.

My mom visited him every single day after he went into the nursing home.

Me -- maybe once a month.

All I can say is -- just don't have any regrets after he is gone. Guilt orno guilt -- only you can decide how you want to remember him. I will say Iwas there when my dad took his last breath -- so I don't have any regretsin that department.

Your post took much courage to publish -- and you voiced many thoughts thatwe as family members of Alzheimer's sufferers have.

This is a terrible disease, especially for the family members...Oh honey I didn't realize somehow you were going thru this. I bet the guilt is eating you up, it would with me too. But the one thing we know in life is, the guilt doesn't repair or mend anything in our life. The only thing I can say to you is, If he would die next week, what would you wish you would of done differently...and do it. Blessings to you and your hubby.

I'm going to say to you what I would say to my mom. You chose the best facility you could find. You put him in a place where they take good care of him and he has his privacy. You went to see him while he knew who you were. Now, he has let you go. When he becomes angry because you are there, who is the visit benefitting? Neither of you. It upsets you both. He loved you. He loves you still somewhere down deep inside. He would never want you to hurt. He would never intentionally hurt you....just as you would never intentionally hurt you. He would not want you to come and see him this way. Maybe a phone call to the home and speaking to a nurse on a day that you plan to visit to see how he is that day. If he knows no one, what good does it do for you to go? It just wears out your car and yourself. He would not want that. You should have no guilt over this. You should be proud of the fact that you put him where he is in good care. He would want you to be happy. That's what love does.

Your daughter lives in the same town. It would also be unpleasant for her to go, but maybe if you are worried about him on a particular day and don't feel like making the trip, she might go by just to check on him for a few minutes. Your family seems to be close and love you, so I bet she wouldn't mind doing that for you. I'm sure she wants YOU around for a long time, so helping you out this way would be a small thing to ask.

Hugs to you. Your heart is in the right place. You are a kind and loving person. We can all feel that. Don't be so hard on yourself. More hugs.

I have no words Deanna, as someone who has lost my love I can understand somewhat but not able to make it better in your mind either. I hope that writing it out has helped you and see that others understand somewhat the pain. I think guilt is natural and normal if that makes it better. I know I went through guilt after my husband died thinking there was something I could have done and didn't. It is one of the ways we process in our minds what has happened. I know there are support groups, have you considered going to one, may not be the right thing for you as after my husband died it wasn't a support group I needed? I didn't want to keep reliving his death with strangers and telling our story over and over again so I stopped going. It just wasn't for me but maybe it would help you.

You can always give me a call if you like, would love to have a chat with you anyway about Italy.

Take care and keep doing what you are doing as that is all we can do as a loving person.

Oh, Deanna, my dear friend! How I long to give you a big hug, to hold you and tell you I care. Nothing I do can change the reality but I hope the support helps you through another day. I've thought so often of how insanely difficult it must be for you. It is a cruel disease. {Is there any that isn't?} Others have already written wise words, I hope they ease your pain and guilt a bit. I hope writing and sharing is the catharsis you need to relieve this pressure that has built up in your heart. You're going through the grief process and guilt is one of the steps in that process. It won't change the reality you face but it will take you along your journey. I believe it will ease as you move onto the next step. God love you, my friend. xoxo

I am surprised that the director was surprised at your guilt. Guilt is a healthy and natural product of a good heart, and Deanna, while I don't know you in real life, I have no hesitation in saying you have one of the biggest hearts. You feel guilt because you love him so dearly. You feel guilt because you shared his dreams. You feel guilt because Alzheimer is a gut-wrenching disease that steals life and leaves behind a shell of a human and so often a mockery of the strong and intelligent person they once were. You continue to visit and whether it is once a week or once a month - you are continuing to honor your love for this man. Do not feel guilt for what others might think as to the frequency of your visits - there is no magical number that makes you a more loving wife and partner. You keep him in your thoughts and prayers and heart every day - but you deserve to live your life too. Alzheimers does not deserve to steal two for the price of one.

Oh Deanna...can I just tell you how this ALL (from the falls, to the anger, to the walking in circles, to the lack of recognition, to the guilt, to the EVERYTHING) sounds so, so, so, SO familiar!!!!! You could EASILY be talking about my dad. GUILT. That is one of the ugly syptoms of Alzheimers that the family members suffer from. Are you doing too much? Are you not doing enough? Do they even know or care? Of course I was coming at it from a daughter's perspective. You are a spouse, which is obviously different. But what I CAN tell you is my mom dealt with the exact same issues and feelings as you are. She was lucky in that she lived in a retirement community that had a memory care facility on sight..so only a 5 minute drive. And even WITH the convenience it got to the point where she severely cut back her visits. It just got to be too stressful and saddening to visit too often. I know that when "I" would go visit I DREADED the car ride there (about 1 1/2 hr trip) because I never knew WHAT I was going to encounter...and as you probably all too well know...it could be bizarre, bizarre stuff. Then I DREADED the car ride home because it was usually in tears. My mom was feeling the same exact way and she was only 5 minutes away. She cut back her visits, despite the ease of location, and you know what...when she DID go, my dad had no idea it was her OR that she hadn't been there in awhile. It got to the point where the falls, the behavior, the new reactions to medications resulted in at LEAST a phone call a day from the facility. It's overwhelming. All I can say is that there is NO correct way to feel or behave in these situations Deanna. YOu have to find a way to cope with this disease that is best for YOU. You have done everything to make sure your husband is well taken care of due to the Alzheimers. Do not forget the OTHER victime of this...yourself and your family. Do what you NEED to do (even if that means not visiting as often), and TRY not to feel guilty about it. I know that is a near imipossible task to take away the guilt completely. I guess I didn't realize the impact of all the stress on my mom until AFTER my dad passed a few months ago. There was actually very little mourning from any of us. We had ALREADY mourned, felt the sadness, felt the stress, felt the guilt. By time he passed it was a fait accompli. The shell of the man that was there was not our dad or husband anymore. And a weight had been lifted from all of us..but especially my mom. It's so obvious to us all now how much she is enjoying life. It's so obvious because we saw her NOT enjoying life for a numbere of years prior. I'm here for you Deanna if you ever want to vent. You have my email. Alzheimers is a disease that robs memories. Don't let it rob YOU of remembering to take care of yourself :)

My friend it's hard but please try and go easy on yourself, try and remember the way he was .. He would not want you to go through this feeling this way .. It must be so hard for you I'm so pleased that we in the blogosphere can reach out ovr the miles to give you a virtual hug and words of comfort....{{{hugs}}}

Prayers and Love to you Deanna! I am sorry you have to go through this hard time and experience watching this disease. Remember, you have a strong faith and family to support you. I agree with Nancy, you have to do what is right for you and let go of the guilt with no regrets. Easier said than done. I am sure this was not an easy post to write, but it is heartfelt and courageous. Keep counting your blessings!

Guilt is such a nasty thing isn't if? I didn't visit my dad the last 6 months he was in a care facility - it was too difficult to see him in that condition. He didn't know who I was and that person who was my dad wasn't there any more. It broke my heart to see him like that and as a young 30 year old I just couldn't do it.

While I can't say I know exactly what you are going through because each situation is different I can say you are in my prayers and thoughts. It sounds like your husband is in a WODNERFUl place which is the biggest battle in long term care facilities.

Thank you for sharing this. I am certain that your honesty will bless others going through this difficult time. May God bless you, and him, with peace -- and may you re-connect in the everlasting home being prepared for you.

I'm so sorry you are going through this. Take care of yourself and just place your beloved hubby in God's hands and rest in the knowledge that you've done all you can to make sure he is well taken care of at this stage in his life. He knew you loved him and you have his love in your heart forever. He would not want you to live with guilt or regrets. (((Hugs)))

I'm so sorry your going through a rough time, I hope you find peace. So many expressed their sympathy and shared wise words to comfort you, I have nothing more to add. Take care of yourself, my dear friend.

Deanna, I can understand to a certain degree, but I know it's different for you as you've been dealing with this longer than I have, and it has to be different having a spouse with Alzheimer's than it is having a parent with it. I wrote a letter to Dad this week on my blog. He won't read it, but fortunately I have written other letters like this to him over the years that he was able to read. I see Dad 2-3 times a week. I live and work about 30 minutes from him. Fortunately he still knows me on most days, but 5 minutes after I leave he doesn't remember that I was there. This lends to the temptation not to go as often because he will forget anyway, thinking I haven't been there in a long time. I visit anyway because I know it lends him some level of joy and peace in those moments, but I actually don't feel guilty when I don't visit Dad because I know he is being well taken care of and my oversight of that care is part of my love for him. He hasn't been abandoned. I am fortunate that Dad still knows me on most days. It will be more difficult I'm sure as things progress for him, but besides trying to lend him some peace and joy, I feel a responsibility to see that he is actually being well taken care of. The only way to do that for me is to show up and show up unscheduled. It may not be three times a week every week, but I do show up every week. There is no one else here that can do that for me on a regular basis. - I actually feel more guilty when I don't visit my Mom. I see her on the same days I see my dad. She is in Assisted Living and has Parkinson's and NPH. She gets lonely and has a sharp mind which in her condition can make things more burdensome. She knows exactly what is happening to Dad and to herself and doesn't handle it well. She is emotionally dependent on me so my guilty feelings are actually more associated with her than my dad. - This is a road that is difficult no matter how you look it. Telling you not to feel guilty won't make you not feel guilty. You just have to do what you believe is right, not just for your husband, but for you and your whole family. Sometimes the thing to do is step back for awhile. I've taken breaks from time to time just because of my stress level. If there is someone else near by that can partner with you in his care you can ask them to check in on him for a period of time that you choose so that you can take a total break from it. This way you will know he is being looked in on, but you can take the break you need. - Every time my sister comes in town I completely back away and don't even go over there. I know someone else has taken the reigns and I can relax. This might help for you. You didn't ask for advice, but you got it! I'm sorry for that. I know there are no easy answers. Dealing with this is truly a marathon, not a sprint. Know that I am praying for you and if you ever need to bend a sympathetic ear, contact me any time! Grace and peace to you sweet lady!

Beautiful Deanna, I am sending you a big mama bear hug today. I hope that you have soaked in the love from every previous post, and really taken them to heart. I too have seen the cruel pain that alzheimer's causes the loved ones. I have often wondered if it isn't a blessing that this awful disease takes away the sick person's memory as I am sure they would rather die than realize the amount of pain it is causing others, and the lack of dignity it has brought upon themselves. Visit when you have the strength, hold your beautiful memories dear and go through the phases of grieving with an open heart. I am certain that deep down the director really does understand the guilt that you are feeling. I am sure that she sees it every day, and it has to be very painful for her to watch too. My hope would be that she would offer resources to help families and loved ones cope with that guilt. You have found him a wonderful home that is trained to keep him comfortable and safe, and some day that handsome man with the beautiful smile will dance freely with happiness in his heart. And when that day comes, we will all be here to wrap you in our arms. Yep, still holding you in that bear hug.

Deanna, I am so sorry for the pain this disease has caused you and your family. My heart aches for you right now because of the pain and guilt you feel. I wish I had a thousand words of wisdom to offer, but of course, I don't. I will say that you are still a loving wife, you have done your best for your husband. You are truly loving him in sickness and in health. Please be kind to yourself. You will figure out how best to resolve the visiting dilemma. Know that I will be praying for you and for your peace of mind.

Dear Deanna, I can't help thinking that if your husband wasn't suffering from this terrible disease he'd be the first to tell you that you must go on with your life. He'd want you to experience joy and to feel loving and caring emotions that are now lost to him. Such a long struggle for the both of you. Hugs to you - I can't imagine how hard it must be.

Dear Deanna, Although I can't know exactly how you feel, I can understand. My Father had alzheimer's and we watched as he gradually drifted away and didn't know who we were any longer. It was most difficult for my Mother, as she had been married to him for 58 years. The last 10 years of his life he was in a nursing home and at first it was the same, we visited often when he knew us and we could still see parts of his personality. But gradually he lost all memory of us and this broke my Mother's heart. She died before him, and I was left to do the visiting all on my own. Every time I visited, it was hard and very sad knowing he didn't even recognize me. But one month before he died, he surprised my husband and I by recognizing us for one glorious last time. We spent the whole afternoon with him, not wishing to let it end. Although he couldn't talk, he could gesture and smile, something he had not done in years. And he held my hand. He reached out and took it. I like to think it was his final gift to us. Your feelings are perfectly normal. Just do what you can, when you feel strong enough. That's all you can do. Somewhere deep inside, he knows who you are and he misses you. Hugs, xoxo

It's so wonderful to see such an outpouring of support for you, Deanna. Followers of Snippits From Springdale,I have a suggestion. Go to www.alz.org/walk. There will be a walk near you, probably this September or October. It will be a great way to show support to our friend and to help find a way to eradicate this horrible disease.

My heart is full after reading your post. I've read the previous comments and everyone has had such wonderful insight. I don't know that I can add anything that hasn't already been said. Sending you blessings and hugs and I know your faith will ultimately lead you in the direction you need to go.

Oh, Deanna. God bless you! I'm sure what you're feeling is quite normal, but it is something you have to work through at your own pace. I pray that God will give you peace, comfort, and wisdom. Don't beat yourself up for trying to go on with your life and have some normalcy. Your sweetie sounds like he is well taken care of, so you need to take care of yourself. I'm so sorry you are dealing with this! Hugs!

Deanna-I think guilt is a natural part of this ugly disease. I think because we are ingrained as women to be caregivers & letting visits slip further away goes against the grain. But I see it differently-my phone calls to my dad aren't everyday-but every few days now. There's only do much that can be said. I do have pangs if guilt but it's also my way of learning to let go-I'm the one that is going to be left behind so it's me that has to learn to cope without a dad. Maybe this is your way of learning to let go-testing your wings. How you deal with grief of loss should only matter to you. As I scroll through your comments-nobody here would ever pass judgement on you I see compassion for you and your beloved who is not the man you knew and I know still love. I know this is easier said than done-but know you are cared about try very hard to learn to let the guilt go. Lean on anyone that will carry you. Xo

phew Deanna; I read your post and hurt with you. It is such a devastating feeling of hopelessness that you have within you, and it's also such a trial of endurance. All I can think to say is to just hold on to your fortitude and strengths that you have and do what you feel is right for now. It's all you can do. Know that many have trodden this path before you as sadly many will continue to do over the years; you are not alone in many ways, though I'm sure you feel it to be that way as it affects you directly. Take care of you, you are important to many. I understand where you're at, having lost my own husband of forty-three years to melanoma cancer, almost three years ago now. Yes so very different to dementia or Alzheimers, but I can completely relate to how much you're hurting.

Strange that we should meet now...and the first post I read is about your husband with Alzheimers..Mine is not but I took care of my Dad for 5 years, until he died from it...Like you the day came when I had to put him in a facility and also like you it was over an hour away from my home...so I only visited once or twice a week...he knew me for a long time during this process but I knew the days were slipping away for us and it made me sad..you see I had only found him when I was 35 and we had a lot of years to make up for...fortunately the healing was complete before he got sick...life is funny, it sends us in directions we could not even dream of and we have to handle them to the best of our ability...We are all so different...I would have given anything for a few more years but that was not to be...I never felt guilty though because I knew it was the best that I could do and I also knew that through my Dad's Alzheimers he taught me the lessons of patience and living in the moment...however many moments that is and how ever often you feel comfortable in going to visit...No one walks in yours shoes Deanna...you are doing the best you can do...you loved him well and you still provide the best care for him...I hope when my day comes...my people will do likewise...Have a good week...and give yourself a break...xoxo

Bless you Deanna! Let it go with dignity and grace by knowing you have done your best and giving 100%. Only you walk in your shoes and I know for one I would not want to be in them when it comes to this type of situation! You set a wonderful example and high standard in blogland! Rosemary

Hello, Deanna, Oftentimes I have the words to express how I'm feeling but just can't write them down, and other times it's just too hard to pull those painful emotions to the surface. I think of you often through this struggle. My mom is now becoming confused and unable to do normal tasks like wash the dishes. She wants to help because that's what she's always done and it hurts to let her as I watch helplessly as she rinses the dishes and calls them clean but it also hurts to refuse her because she wants to matter. It's so bleeping cruel Deanna. And selfishly though normal I fear for my future. When is it going to happen to me? Have you gone to see a therapist? I think that talking with someone may help you sort out your feelings. I give this advice knowing full well that I should do the same. Sending so much love your way. xxxooo, Becky